Just Diagnosed too.

S

SarahProcter

Guest
My daughter was diagnosed based on newborn screening, without any symptoms - healthy weight, no lung issues, etc. Her CF clinic doctors have told us that she has 'atypical' CF based on her particular genetic mutations, the fact that she is pancreatic sufficient (doesn't need to take enzymes), and her sweat tests are, while borderline, very low for CF, almost normal (41, 40, and 37). She is almost 17 months old now and honestly, without the newborn screening she never would have been diagnosed, she shows no symptoms and is developing beautifully.

It's still a very horrible experience, receiving the diagnosis. I am still recovering emotionally from the first phone call about it, and that was over a year ago. What I can tell you for certain is that your child is still wonderful and still healthy, she didn't suddenly become deathly ill overnight with the screening results. CF is a progressive illness though so the most important thing is to work with a CF center and keep a really watchful eye on your baby, and how she grows and develops, and how her test results change over time. If they recommend treatment, even though she isn't "sick", it's because there are treatments that are shown to do the most good if you start them before you're showing symptoms. The name of the game with CF is prevention and prompt response to any infections that may crop up - you want to keep her as healthy as possible!

Like the prior poster said, start learning, but don't let this rob you of the joy of your daughter's infancy. She's still wonderful. Love her and enjoy her!
 
S

SarahProcter

Guest
My daughter was diagnosed based on newborn screening, without any symptoms - healthy weight, no lung issues, etc. Her CF clinic doctors have told us that she has 'atypical' CF based on her particular genetic mutations, the fact that she is pancreatic sufficient (doesn't need to take enzymes), and her sweat tests are, while borderline, very low for CF, almost normal (41, 40, and 37). She is almost 17 months old now and honestly, without the newborn screening she never would have been diagnosed, she shows no symptoms and is developing beautifully.

It's still a very horrible experience, receiving the diagnosis. I am still recovering emotionally from the first phone call about it, and that was over a year ago. What I can tell you for certain is that your child is still wonderful and still healthy, she didn't suddenly become deathly ill overnight with the screening results. CF is a progressive illness though so the most important thing is to work with a CF center and keep a really watchful eye on your baby, and how she grows and develops, and how her test results change over time. If they recommend treatment, even though she isn't "sick", it's because there are treatments that are shown to do the most good if you start them before you're showing symptoms. The name of the game with CF is prevention and prompt response to any infections that may crop up - you want to keep her as healthy as possible!

Like the prior poster said, start learning, but don't let this rob you of the joy of your daughter's infancy. She's still wonderful. Love her and enjoy her!
 
S

SarahProcter

Guest
My daughter was diagnosed based on newborn screening, without any symptoms - healthy weight, no lung issues, etc. Her CF clinic doctors have told us that she has 'atypical' CF based on her particular genetic mutations, the fact that she is pancreatic sufficient (doesn't need to take enzymes), and her sweat tests are, while borderline, very low for CF, almost normal (41, 40, and 37). She is almost 17 months old now and honestly, without the newborn screening she never would have been diagnosed, she shows no symptoms and is developing beautifully.

It's still a very horrible experience, receiving the diagnosis. I am still recovering emotionally from the first phone call about it, and that was over a year ago. What I can tell you for certain is that your child is still wonderful and still healthy, she didn't suddenly become deathly ill overnight with the screening results. CF is a progressive illness though so the most important thing is to work with a CF center and keep a really watchful eye on your baby, and how she grows and develops, and how her test results change over time. If they recommend treatment, even though she isn't "sick", it's because there are treatments that are shown to do the most good if you start them before you're showing symptoms. The name of the game with CF is prevention and prompt response to any infections that may crop up - you want to keep her as healthy as possible!

Like the prior poster said, start learning, but don't let this rob you of the joy of your daughter's infancy. She's still wonderful. Love her and enjoy her!
 
S

SarahProcter

Guest
My daughter was diagnosed based on newborn screening, without any symptoms - healthy weight, no lung issues, etc. Her CF clinic doctors have told us that she has 'atypical' CF based on her particular genetic mutations, the fact that she is pancreatic sufficient (doesn't need to take enzymes), and her sweat tests are, while borderline, very low for CF, almost normal (41, 40, and 37). She is almost 17 months old now and honestly, without the newborn screening she never would have been diagnosed, she shows no symptoms and is developing beautifully.

It's still a very horrible experience, receiving the diagnosis. I am still recovering emotionally from the first phone call about it, and that was over a year ago. What I can tell you for certain is that your child is still wonderful and still healthy, she didn't suddenly become deathly ill overnight with the screening results. CF is a progressive illness though so the most important thing is to work with a CF center and keep a really watchful eye on your baby, and how she grows and develops, and how her test results change over time. If they recommend treatment, even though she isn't "sick", it's because there are treatments that are shown to do the most good if you start them before you're showing symptoms. The name of the game with CF is prevention and prompt response to any infections that may crop up - you want to keep her as healthy as possible!

Like the prior poster said, start learning, but don't let this rob you of the joy of your daughter's infancy. She's still wonderful. Love her and enjoy her!
 
S

SarahProcter

Guest
My daughter was diagnosed based on newborn screening, without any symptoms - healthy weight, no lung issues, etc. Her CF clinic doctors have told us that she has 'atypical' CF based on her particular genetic mutations, the fact that she is pancreatic sufficient (doesn't need to take enzymes), and her sweat tests are, while borderline, very low for CF, almost normal (41, 40, and 37). She is almost 17 months old now and honestly, without the newborn screening she never would have been diagnosed, she shows no symptoms and is developing beautifully.
<br />
<br />It's still a very horrible experience, receiving the diagnosis. I am still recovering emotionally from the first phone call about it, and that was over a year ago. What I can tell you for certain is that your child is still wonderful and still healthy, she didn't suddenly become deathly ill overnight with the screening results. CF is a progressive illness though so the most important thing is to work with a CF center and keep a really watchful eye on your baby, and how she grows and develops, and how her test results change over time. If they recommend treatment, even though she isn't "sick", it's because there are treatments that are shown to do the most good if you start them before you're showing symptoms. The name of the game with CF is prevention and prompt response to any infections that may crop up - you want to keep her as healthy as possible!
<br />
<br />Like the prior poster said, start learning, but don't let this rob you of the joy of your daughter's infancy. She's still wonderful. Love her and enjoy her!
 
3

3LilFightersmom

New member
First of all, welcome to this site and congratulations on the birth of your daughter!

I will start off by saying that yes, you will find a lot of discussion about "mild, atypical etc". I personally don't think anyone's cf is mild. Maybe their symptoms present differently, but ALL cf is progressive. I have 3 boys with cf. My youngest son was picked up by the newborn screening in California. High borderline sweat test, pancreatic sufficient. He was 9'2 oz at birth... no weight gain issues at all. Hence, "atypical cf" if that's what you want to call it. By 4 months old, he was admitted with pneumonia, and was culturing pseudomonas. We found out he also had reflux and was aspirating in to his lungs. He stayed in the hosptial 5 times in his first year of life each for the full two weeks to have iv antibiotics when oral antibiotics and steroids did not work. I do not think there is anything mild about that. His older brothers were tested as well.( they were positive as well) My oldest son's voice had changed the previous year, he had a really bad cough that wouldn't go away for 3 months. He had what we thought was bronchitis alot when he was younger.Both of the boys would cough a lot after running around, and tire easily. They also would get really lethargic in the heat. My middle child had been hospitalized as an infant/toddler for pnemonia 3 times. He was diagnosed as asthma and reoccurring bronchitis. Because of their steady weight gain etc, they were never thought to be tested for cf. They each test high borderline on a sweat test. My oldest has lung function in the 100's... my middle child is in the 70's, and has gone as low as 62 when sick. He has been hospitalized this year. They both have reflux as well and the middle child and 18 month old have elevated liver enzymes.

I am not telling you this to scare you. But I am sharing this because I want you to know that even within a family where siblings share the same mutations, there are different outcomes. My yongest has had a hard time right off the bat, and my middle child had more issues than my oldest.

Nobody can tell you exactly what to expect. I would however advise that you not take the words "mild or atypical" to heart. A lot of times these labels refer to the pancreatic status, being suffcient or insufficent. Although having your child's bmi at a healthy level and not suffering from malabsorbtion will give your child an advantage, these labels can not always predict what the childs lung involvement will be. Lung involvement leads to scarring and damage. You need to still take diagnosis seriously and do what you can to keep those lungs healthy! This will include doing manual cpt or using a vest when she is big enough, doing all medications as prescibed by your doctor, and taking her to an accredited center atleast every 3 months and getting throat cultures done to make sure she isn't culturing any harmful bugs (if she is cultured regularly then they can treat aggresively right away should something like psedumonas pop up)

sorry this is SO long, but I just want to tell you what I have been through so far, and let you know that you are not alone. CF can be unpredictable and scary at times, but you have a group of people here that will be with you always!

Take care and keep us updated.
 
3

3LilFightersmom

New member
First of all, welcome to this site and congratulations on the birth of your daughter!

I will start off by saying that yes, you will find a lot of discussion about "mild, atypical etc". I personally don't think anyone's cf is mild. Maybe their symptoms present differently, but ALL cf is progressive. I have 3 boys with cf. My youngest son was picked up by the newborn screening in California. High borderline sweat test, pancreatic sufficient. He was 9'2 oz at birth... no weight gain issues at all. Hence, "atypical cf" if that's what you want to call it. By 4 months old, he was admitted with pneumonia, and was culturing pseudomonas. We found out he also had reflux and was aspirating in to his lungs. He stayed in the hosptial 5 times in his first year of life each for the full two weeks to have iv antibiotics when oral antibiotics and steroids did not work. I do not think there is anything mild about that. His older brothers were tested as well.( they were positive as well) My oldest son's voice had changed the previous year, he had a really bad cough that wouldn't go away for 3 months. He had what we thought was bronchitis alot when he was younger.Both of the boys would cough a lot after running around, and tire easily. They also would get really lethargic in the heat. My middle child had been hospitalized as an infant/toddler for pnemonia 3 times. He was diagnosed as asthma and reoccurring bronchitis. Because of their steady weight gain etc, they were never thought to be tested for cf. They each test high borderline on a sweat test. My oldest has lung function in the 100's... my middle child is in the 70's, and has gone as low as 62 when sick. He has been hospitalized this year. They both have reflux as well and the middle child and 18 month old have elevated liver enzymes.

I am not telling you this to scare you. But I am sharing this because I want you to know that even within a family where siblings share the same mutations, there are different outcomes. My yongest has had a hard time right off the bat, and my middle child had more issues than my oldest.

Nobody can tell you exactly what to expect. I would however advise that you not take the words "mild or atypical" to heart. A lot of times these labels refer to the pancreatic status, being suffcient or insufficent. Although having your child's bmi at a healthy level and not suffering from malabsorbtion will give your child an advantage, these labels can not always predict what the childs lung involvement will be. Lung involvement leads to scarring and damage. You need to still take diagnosis seriously and do what you can to keep those lungs healthy! This will include doing manual cpt or using a vest when she is big enough, doing all medications as prescibed by your doctor, and taking her to an accredited center atleast every 3 months and getting throat cultures done to make sure she isn't culturing any harmful bugs (if she is cultured regularly then they can treat aggresively right away should something like psedumonas pop up)

sorry this is SO long, but I just want to tell you what I have been through so far, and let you know that you are not alone. CF can be unpredictable and scary at times, but you have a group of people here that will be with you always!

Take care and keep us updated.
 
3

3LilFightersmom

New member
First of all, welcome to this site and congratulations on the birth of your daughter!

I will start off by saying that yes, you will find a lot of discussion about "mild, atypical etc". I personally don't think anyone's cf is mild. Maybe their symptoms present differently, but ALL cf is progressive. I have 3 boys with cf. My youngest son was picked up by the newborn screening in California. High borderline sweat test, pancreatic sufficient. He was 9'2 oz at birth... no weight gain issues at all. Hence, "atypical cf" if that's what you want to call it. By 4 months old, he was admitted with pneumonia, and was culturing pseudomonas. We found out he also had reflux and was aspirating in to his lungs. He stayed in the hosptial 5 times in his first year of life each for the full two weeks to have iv antibiotics when oral antibiotics and steroids did not work. I do not think there is anything mild about that. His older brothers were tested as well.( they were positive as well) My oldest son's voice had changed the previous year, he had a really bad cough that wouldn't go away for 3 months. He had what we thought was bronchitis alot when he was younger.Both of the boys would cough a lot after running around, and tire easily. They also would get really lethargic in the heat. My middle child had been hospitalized as an infant/toddler for pnemonia 3 times. He was diagnosed as asthma and reoccurring bronchitis. Because of their steady weight gain etc, they were never thought to be tested for cf. They each test high borderline on a sweat test. My oldest has lung function in the 100's... my middle child is in the 70's, and has gone as low as 62 when sick. He has been hospitalized this year. They both have reflux as well and the middle child and 18 month old have elevated liver enzymes.

I am not telling you this to scare you. But I am sharing this because I want you to know that even within a family where siblings share the same mutations, there are different outcomes. My yongest has had a hard time right off the bat, and my middle child had more issues than my oldest.

Nobody can tell you exactly what to expect. I would however advise that you not take the words "mild or atypical" to heart. A lot of times these labels refer to the pancreatic status, being suffcient or insufficent. Although having your child's bmi at a healthy level and not suffering from malabsorbtion will give your child an advantage, these labels can not always predict what the childs lung involvement will be. Lung involvement leads to scarring and damage. You need to still take diagnosis seriously and do what you can to keep those lungs healthy! This will include doing manual cpt or using a vest when she is big enough, doing all medications as prescibed by your doctor, and taking her to an accredited center atleast every 3 months and getting throat cultures done to make sure she isn't culturing any harmful bugs (if she is cultured regularly then they can treat aggresively right away should something like psedumonas pop up)

sorry this is SO long, but I just want to tell you what I have been through so far, and let you know that you are not alone. CF can be unpredictable and scary at times, but you have a group of people here that will be with you always!

Take care and keep us updated.
 
3

3LilFightersmom

New member
First of all, welcome to this site and congratulations on the birth of your daughter!

I will start off by saying that yes, you will find a lot of discussion about "mild, atypical etc". I personally don't think anyone's cf is mild. Maybe their symptoms present differently, but ALL cf is progressive. I have 3 boys with cf. My youngest son was picked up by the newborn screening in California. High borderline sweat test, pancreatic sufficient. He was 9'2 oz at birth... no weight gain issues at all. Hence, "atypical cf" if that's what you want to call it. By 4 months old, he was admitted with pneumonia, and was culturing pseudomonas. We found out he also had reflux and was aspirating in to his lungs. He stayed in the hosptial 5 times in his first year of life each for the full two weeks to have iv antibiotics when oral antibiotics and steroids did not work. I do not think there is anything mild about that. His older brothers were tested as well.( they were positive as well) My oldest son's voice had changed the previous year, he had a really bad cough that wouldn't go away for 3 months. He had what we thought was bronchitis alot when he was younger.Both of the boys would cough a lot after running around, and tire easily. They also would get really lethargic in the heat. My middle child had been hospitalized as an infant/toddler for pnemonia 3 times. He was diagnosed as asthma and reoccurring bronchitis. Because of their steady weight gain etc, they were never thought to be tested for cf. They each test high borderline on a sweat test. My oldest has lung function in the 100's... my middle child is in the 70's, and has gone as low as 62 when sick. He has been hospitalized this year. They both have reflux as well and the middle child and 18 month old have elevated liver enzymes.

I am not telling you this to scare you. But I am sharing this because I want you to know that even within a family where siblings share the same mutations, there are different outcomes. My yongest has had a hard time right off the bat, and my middle child had more issues than my oldest.

Nobody can tell you exactly what to expect. I would however advise that you not take the words "mild or atypical" to heart. A lot of times these labels refer to the pancreatic status, being suffcient or insufficent. Although having your child's bmi at a healthy level and not suffering from malabsorbtion will give your child an advantage, these labels can not always predict what the childs lung involvement will be. Lung involvement leads to scarring and damage. You need to still take diagnosis seriously and do what you can to keep those lungs healthy! This will include doing manual cpt or using a vest when she is big enough, doing all medications as prescibed by your doctor, and taking her to an accredited center atleast every 3 months and getting throat cultures done to make sure she isn't culturing any harmful bugs (if she is cultured regularly then they can treat aggresively right away should something like psedumonas pop up)

sorry this is SO long, but I just want to tell you what I have been through so far, and let you know that you are not alone. CF can be unpredictable and scary at times, but you have a group of people here that will be with you always!

Take care and keep us updated.
 
3

3LilFightersmom

New member
First of all, welcome to this site and congratulations on the birth of your daughter!
<br />
<br />I will start off by saying that yes, you will find a lot of discussion about "mild, atypical etc". I personally don't think anyone's cf is mild. Maybe their symptoms present differently, but ALL cf is progressive. I have 3 boys with cf. My youngest son was picked up by the newborn screening in California. High borderline sweat test, pancreatic sufficient. He was 9'2 oz at birth... no weight gain issues at all. Hence, "atypical cf" if that's what you want to call it. By 4 months old, he was admitted with pneumonia, and was culturing pseudomonas. We found out he also had reflux and was aspirating in to his lungs. He stayed in the hosptial 5 times in his first year of life each for the full two weeks to have iv antibiotics when oral antibiotics and steroids did not work. I do not think there is anything mild about that. His older brothers were tested as well.( they were positive as well) My oldest son's voice had changed the previous year, he had a really bad cough that wouldn't go away for 3 months. He had what we thought was bronchitis alot when he was younger.Both of the boys would cough a lot after running around, and tire easily. They also would get really lethargic in the heat. My middle child had been hospitalized as an infant/toddler for pnemonia 3 times. He was diagnosed as asthma and reoccurring bronchitis. Because of their steady weight gain etc, they were never thought to be tested for cf. They each test high borderline on a sweat test. My oldest has lung function in the 100's... my middle child is in the 70's, and has gone as low as 62 when sick. He has been hospitalized this year. They both have reflux as well and the middle child and 18 month old have elevated liver enzymes.
<br />
<br />I am not telling you this to scare you. But I am sharing this because I want you to know that even within a family where siblings share the same mutations, there are different outcomes. My yongest has had a hard time right off the bat, and my middle child had more issues than my oldest.
<br />
<br />Nobody can tell you exactly what to expect. I would however advise that you not take the words "mild or atypical" to heart. A lot of times these labels refer to the pancreatic status, being suffcient or insufficent. Although having your child's bmi at a healthy level and not suffering from malabsorbtion will give your child an advantage, these labels can not always predict what the childs lung involvement will be. Lung involvement leads to scarring and damage. You need to still take diagnosis seriously and do what you can to keep those lungs healthy! This will include doing manual cpt or using a vest when she is big enough, doing all medications as prescibed by your doctor, and taking her to an accredited center atleast every 3 months and getting throat cultures done to make sure she isn't culturing any harmful bugs (if she is cultured regularly then they can treat aggresively right away should something like psedumonas pop up)
<br />
<br />sorry this is SO long, but I just want to tell you what I have been through so far, and let you know that you are not alone. CF can be unpredictable and scary at times, but you have a group of people here that will be with you always!
<br />
<br />Take care and keep us updated.
 
O

Olberding

New member
SarahProctor- Thanks for your email. Our daughter's sweat test came back with a 33 and a 28, which I was told are fairly low. She is now 10 weeks old and weights 12 lbs already, which is very encouraging. She even had a cold a few weeks back that never turned into RSV,as out regular ped thought it would. She just seems so healthy.
I just want her to had a "normal" life!!! I can handle a few extra cold and such... I fear that as she get older CF will progess and thats what scares me, the unknown.
 
O

Olberding

New member
SarahProctor- Thanks for your email. Our daughter's sweat test came back with a 33 and a 28, which I was told are fairly low. She is now 10 weeks old and weights 12 lbs already, which is very encouraging. She even had a cold a few weeks back that never turned into RSV,as out regular ped thought it would. She just seems so healthy.
I just want her to had a "normal" life!!! I can handle a few extra cold and such... I fear that as she get older CF will progess and thats what scares me, the unknown.
 
O

Olberding

New member
SarahProctor- Thanks for your email. Our daughter's sweat test came back with a 33 and a 28, which I was told are fairly low. She is now 10 weeks old and weights 12 lbs already, which is very encouraging. She even had a cold a few weeks back that never turned into RSV,as out regular ped thought it would. She just seems so healthy.
I just want her to had a "normal" life!!! I can handle a few extra cold and such... I fear that as she get older CF will progess and thats what scares me, the unknown.
 
O

Olberding

New member
SarahProctor- Thanks for your email. Our daughter's sweat test came back with a 33 and a 28, which I was told are fairly low. She is now 10 weeks old and weights 12 lbs already, which is very encouraging. She even had a cold a few weeks back that never turned into RSV,as out regular ped thought it would. She just seems so healthy.
I just want her to had a "normal" life!!! I can handle a few extra cold and such... I fear that as she get older CF will progess and thats what scares me, the unknown.
 
O

Olberding

New member
SarahProctor- Thanks for your email. Our daughter's sweat test came back with a 33 and a 28, which I was told are fairly low. She is now 10 weeks old and weights 12 lbs already, which is very encouraging. She even had a cold a few weeks back that never turned into RSV,as out regular ped thought it would. She just seems so healthy.
<br />I just want her to had a "normal" life!!! I can handle a few extra cold and such... I fear that as she get older CF will progess and thats what scares me, the unknown.
 
M

mom2caseyafrica

New member
My daughters CF doctor told me that she is asyptomatic at her last doctors appointment. I knew a lot about CF before my daughter was born. I actually studied it in school. So I looked for signs from the day she was born. The only thing I noticed was that she was not gaining weight fast enough. I figured that was normal because most of my family members, including myself, are very skinny and have a hard time gaining weight. I thought nothing of it. Once she was diagnosed I started noticing little things I hadnt noticed before. She snores, and she was very tiny. My aunt, who I came to live with when Casey was 6 weeks old says she has filled out a lot and no longer looks like a skeleton with skin. The enzymes have helped a lot. The first week she was on them she gained almost a whole pound!
Part of me wishes they were wrong, and that she is fine. She seems fine. But I know anything could happen. And I hate the waiting. I hate not knowing what is going to happen and just feeling like Im waiting for everything to go downhill.
I was doing some research on the specific mutations that my daughter has. I found some interesting information that confused me even more. I need to ask her doctor about it. But I was curious, what mutations does your daughter have
(I hate the word mutation)
 
M

mom2caseyafrica

New member
My daughters CF doctor told me that she is asyptomatic at her last doctors appointment. I knew a lot about CF before my daughter was born. I actually studied it in school. So I looked for signs from the day she was born. The only thing I noticed was that she was not gaining weight fast enough. I figured that was normal because most of my family members, including myself, are very skinny and have a hard time gaining weight. I thought nothing of it. Once she was diagnosed I started noticing little things I hadnt noticed before. She snores, and she was very tiny. My aunt, who I came to live with when Casey was 6 weeks old says she has filled out a lot and no longer looks like a skeleton with skin. The enzymes have helped a lot. The first week she was on them she gained almost a whole pound!
Part of me wishes they were wrong, and that she is fine. She seems fine. But I know anything could happen. And I hate the waiting. I hate not knowing what is going to happen and just feeling like Im waiting for everything to go downhill.
I was doing some research on the specific mutations that my daughter has. I found some interesting information that confused me even more. I need to ask her doctor about it. But I was curious, what mutations does your daughter have
(I hate the word mutation)
 
M

mom2caseyafrica

New member
My daughters CF doctor told me that she is asyptomatic at her last doctors appointment. I knew a lot about CF before my daughter was born. I actually studied it in school. So I looked for signs from the day she was born. The only thing I noticed was that she was not gaining weight fast enough. I figured that was normal because most of my family members, including myself, are very skinny and have a hard time gaining weight. I thought nothing of it. Once she was diagnosed I started noticing little things I hadnt noticed before. She snores, and she was very tiny. My aunt, who I came to live with when Casey was 6 weeks old says she has filled out a lot and no longer looks like a skeleton with skin. The enzymes have helped a lot. The first week she was on them she gained almost a whole pound!
Part of me wishes they were wrong, and that she is fine. She seems fine. But I know anything could happen. And I hate the waiting. I hate not knowing what is going to happen and just feeling like Im waiting for everything to go downhill.
I was doing some research on the specific mutations that my daughter has. I found some interesting information that confused me even more. I need to ask her doctor about it. But I was curious, what mutations does your daughter have
(I hate the word mutation)
 
M

mom2caseyafrica

New member
My daughters CF doctor told me that she is asyptomatic at her last doctors appointment. I knew a lot about CF before my daughter was born. I actually studied it in school. So I looked for signs from the day she was born. The only thing I noticed was that she was not gaining weight fast enough. I figured that was normal because most of my family members, including myself, are very skinny and have a hard time gaining weight. I thought nothing of it. Once she was diagnosed I started noticing little things I hadnt noticed before. She snores, and she was very tiny. My aunt, who I came to live with when Casey was 6 weeks old says she has filled out a lot and no longer looks like a skeleton with skin. The enzymes have helped a lot. The first week she was on them she gained almost a whole pound!
Part of me wishes they were wrong, and that she is fine. She seems fine. But I know anything could happen. And I hate the waiting. I hate not knowing what is going to happen and just feeling like Im waiting for everything to go downhill.
I was doing some research on the specific mutations that my daughter has. I found some interesting information that confused me even more. I need to ask her doctor about it. But I was curious, what mutations does your daughter have
(I hate the word mutation)
 
M

mom2caseyafrica

New member
My daughters CF doctor told me that she is asyptomatic at her last doctors appointment. I knew a lot about CF before my daughter was born. I actually studied it in school. So I looked for signs from the day she was born. The only thing I noticed was that she was not gaining weight fast enough. I figured that was normal because most of my family members, including myself, are very skinny and have a hard time gaining weight. I thought nothing of it. Once she was diagnosed I started noticing little things I hadnt noticed before. She snores, and she was very tiny. My aunt, who I came to live with when Casey was 6 weeks old says she has filled out a lot and no longer looks like a skeleton with skin. The enzymes have helped a lot. The first week she was on them she gained almost a whole pound!
<br />Part of me wishes they were wrong, and that she is fine. She seems fine. But I know anything could happen. And I hate the waiting. I hate not knowing what is going to happen and just feeling like Im waiting for everything to go downhill.
<br />I was doing some research on the specific mutations that my daughter has. I found some interesting information that confused me even more. I need to ask her doctor about it. But I was curious, what mutations does your daughter have
<br />(I hate the word mutation)
 
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